Patient-centered care has become a foundational principle in healthcare delivery, yet the systematic integration of patient and caregiver perspectives into continuing medical education (CME) curriculum development remains underutilized. Traditional needs assessment methodologies, including literature reviews, expert faculty consultation and performance data analysis provide valuable insights into clinical knowledge gaps but may inadequately capture the lived experiences that shape patient outcomes and satisfaction.

Lennox-Gastaut Syndrome (LGS) presents a compelling case for patient-informed educational intervention. As one of the most severe and treatment-resistant forms of childhood-onset epilepsy, LGS is characterized by multiple seizure types, cognitive impairment and lifelong care needs. Despite advances in therapeutic options, care for this population remains fragmented; diagnostic delays average more than two years, healthcare providers report limited exposure to the daily realities faced by affected families, and caregivers frequently lack access to credible, tailored guidance. This convergence of clinical complexity and care fragmentation underscored the need at our organization for an educational approach that directly incorporates caregiver perspectives into provider learning — and as this article describes, the resulting five-phase tethered education model produced measurable gains in clinician knowledge, competence and confidence while revealing that caregivers hold critical insights often missed by conventional needs assessments.

A Direct Pathway From Patient Insight to Provider Education

A multi-institutional collaboration involving Iridium Continuing Education, LLC (Iridium CE), the LGS Foundation and Partners in Clinical Education (Partners) developed and implemented a five-phase "tethered education model" designed to create a direct pathway from patient insight to provider education.

Phase 1 (Patient/Caregiver Sessions): The team conducted three live interactive sessions in July and August 2025, incorporating polling, question-and-answer discussions and documentary content. Expert multidisciplinary physician and patient advocate faculty led the sessions, which aimed to educate and support caregivers while systematically capturing their experiences, concerns and unmet needs to inform HCP curriculum development.

Phase 2 (Insights Analysis): The team systematically analyzed qualitative and quantitative data from caregiver sessions, categorizing emergent themes by domain: daily care challenges, perceptions of clinical encounters and barriers to optimal disease management.

Phase 3 (Faculty Integration): The team presented analyzed caregiver insights to clinical faculty responsible for HCP curriculum development. Faculty then used these findings to align learning objectives with documented caregiver priorities.

Phase 4 (HCP Education): The team delivered three CME-accredited live virtual sessions in Sept.–Oct. 2025, with content directly informed by Phase 1–3 findings. Pre-, post- and follow-up assessments measured changes in knowledge, competence, confidence and intended performance.

Phase 5 (Outcomes Measured): The team evaluated impact on both caregiver and HCP cohorts, measuring knowledge retention, competence gains, confidence shifts and self-reported practice changes at follow-up to assess durability and real-world application of the educational intervention.

Three Key Outcomes

The collaboration produced multiple meaningful insights for our institution, most notably the following three.

1. Caregiver Sessions Revealed Critical Unmet Needs

More than 150 caregivers completed the activity (exceeding the target of 125). Participants spanned diverse stages of the LGS journey, from newly diagnosed families to those managing the condition for seven or more years, fostering rich peer learning across experience levels.

In the activity feedback, participants described crushing care burdens, with one noting, “I am my son’s nurse but struggle to get his 40 hours approved by the state.” Transition to adult care emerged as a major concern: “The adult care programs lump our kids with other adults, which results in incompatibilities.” Caregivers also highlighted that non-seizure symptoms, behavioral issues, feeding problems and sleep disruptions profoundly affect daily life, yet receive inadequate clinical attention. As one caregiver explained, “Seizures are just one part of it. The aggression, the lack of sleep, the feeding struggles; those are the things that wear you down.” These insights directly shaped HCP curriculum priorities. Notably, 85% of caregivers wanted behavioral challenge education; 99% expressed interest in stress management and self-care strategies.

At follow-up assessment conducted 30-60 days post activity (n=25), participants self-reported improvements across multiple domains: emotional health (81%), self-efficacy in healthcare provider advocacy (78%) and clinical appointment preparation (62%).

2. Clinicians Showed Significant Knowledge and Practice Gains

The HCP program reached 732 learners across live and enduring formats, with 513 completing the activity. The audience included physicians (49%), nurse practitioners and physician assistants (34%) and other healthcare professionals (17%), with specialties spanning pediatrics, neurology/epileptology and other disciplines. Notably, more than half practiced in community or private settings, frontline providers critical for early recognition and referral of complex epilepsy syndromes.

Among the 513 completers, knowledge, competence and confidence all improved significantly (P<0.05). Knowledge scores jumped more than 30 percentage points and competence followed a similar trajectory, but the standout was confidence in managing LGS patients, which nearly tripled. Gains held at follow-up, confirming that the learning was durable, not just momentary.

Beyond learning gains, clinicians surveyed at follow-up who treat patients with LGS reported meaningful practice changes: 71% reported increased use of shared decision-making when discussing treatment goals, 68% reported more frequent caregiver counseling and 61% reported earlier diagnostic evaluation and referral (n=53, filtered to clinicians who currently treat LGS patients).

Small group discussions yielded actionable clinical insights. Participants emphasized the importance of early transition planning, with one clinician noting “If you are starting the transition process at 15 or 16 years old, you are starting too late.” Others reflected on communication practices: “Hearing that families want to hear the hard stuff in order to most effectively prepare was eye-opening.” The discussions reinforced a patient-centered philosophy, with participants acknowledging that “parents truly know their children best” and must play an active role in care decisions.

3. From Caregiver Voices to Learning Objectives

Analysis of caregiver sessions identified four priority themes that directly informed HCP learning objectives. Caregiver frustration with diagnostic delays informed a learning objective on early recognition protocols, demonstrating the largest improvement: 46% to 89% (+43 points). Caregiver concerns about unclear medication benefits shaped a learning objective on treatment optimization (+38 points). Significant apprehension regarding transition to adult care informed a learning objective on transition planning protocols, with scores improving from 57% to 88% (+31 points). Finally, reports that non-seizure symptoms were inadequately addressed in clinical encounters shaped a learning objective on holistic outcome assessment, with improvement from 44% to 74% (+30 points).

Qualitative feedback from HCP participants validated the educational approach, with clinicians reporting that caregiver narratives prompted reconsideration of their communication practices with families.

The Tethered Education Model: A Methodological Advancement

Unlike traditional approaches that rely primarily on expert opinion and published literature to identify educational gaps, this model establishes a structured, repeatable mechanism for translating authentic patient experiences into measurable learning objectives.

The observed alignment between caregiver-identified priorities and HCP knowledge gaps suggests that patients and caregivers possess critical insights into educational needs that may not be captured through conventional needs assessment methods. Across all four caregiver-informed learning objectives, scores improved by an average of 35.5 percentage points, with early recognition protocols showing the largest single gain (+43 points), particularly noteworthy given that diagnostic delay represents a persistent challenge in LGS management with significant implications for patient outcomes.

Self-reported practice changes included earlier diagnostic intervention, integration of holistic outcome assessment and more intentional transition planning and caregiver counseling. With 87% of HCP learners committing to practice modifications affecting an estimated 225+ patients weekly, the potential downstream impact warrants further investigation through longitudinal outcomes assessment.

However, several limitations should be considered when interpreting these findings. Follow-up samples were smaller than initial cohorts,  caregiver (n=19) and HCP (n=97), potentially affecting generalizability of outcomes. Performance changes were based on self-report rather than objective clinical measures. Additionally, the model’s applicability to disease states with different patient-caregiver dynamics requires further study.

When Patient Voices Drives Provider Learning

This initiative demonstrates that systematically incorporating patient and caregiver voices into CME can enhance healthcare professionals’ knowledge, competence and confidence in managing complex conditions such as Lennox-Gastaut Syndrome. The five-phase tethered education model provides a replicable framework for aligning educational content with patient-identified priorities. The findings support the hypothesis that when patient voice directly informs provider learning, both clinical knowledge and patient-centered care competencies can be simultaneously advanced. More broadly, these findings suggest that the CME field has an opportunity to move beyond traditional expert-driven needs assessments and embrace patient and caregiver perspectives as a core component of curriculum design. Future research should examine long-term clinical outcomes, explore how similar models perform across diverse therapeutic areas and care settings and investigate whether this approach can help close persistent gaps between what patients need and what providers are trained to deliver.

Acknowledgment

This educational initiative was supported by an independent educational grant from Jazz Pharmaceuticals.

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Disclosure: In accordance with Iridium CE's Transparent Disclosure of AI Use policy, artificial intelligence tools were utilized during the development of this article to support writing, literature synthesis and evidence summarization. All AI-assisted outputs underwent rigorous human review and verification by qualified subject matter experts and medical editors prior to inclusion. Final content reflects expert judgment and accuracy validation. 

Parameter	Detail
AI Platform	Claude (Anthropic)
Version	4.5 Opus
Date of Use	December 2025,  January 2026, February  2026
Application	Support writing, literature synthesis, and evidence summarization
Reviewers	Melissa A. Wiles, FACEHP; Elaine C. Wirrell, MD; Michael R. Lemon, MBA, FACEHP, CHCP, Alyssa Ross

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Melissa A. Wiles, FACEHP, is the president and founder of Iridum CE. She has spent the last two decades in the CME/CE industry focusing on identifying gaps in clinical practice and designing learning interventions through traditional and innovative programming to meet the changing needs of today’s busy learners. A focus of her interests includes blending traditional and novel formats to meet learners where they are.

 

Elaine C. Wirrell, MD, is the chair and professor of Child Neurology and Program Director of Child and Adolescent Neurology at the Mayo Clinic in Rochester, Minnesota. She completed medical school at the University of British Columbia and her Pediatric Neurology training at Dalhousie University in Halifax, Nova Scotia. She is the past co-chair of the Nosology and Status Epilepticus Task Force, co-chair of the Pediatric Medical Therapies Task Force and incoming Chair of the Pediatrics Commission of the International League Against Epilepsy. She serves as the Co-Editor-in-Chief of Epilepsy.com and is on the Medical Advisory Board for the Dravet Syndrome Foundation and the Lennox-Gastaut Foundation. Dr. Wirrell’s main research interests are in early onset, medically intractable epilepsies, including developmental and epileptic encephalopathies and epidemiology and comorbidities of pediatric epilepsy. She is the recipient of the 2021 Kiffin-Penry Award from the American Epilepsy Society and the 2016 Distinguished Clinician Award from Mayo Clinic.

Michael R. Lemon, MBA, CHCP, FACEHP,  has over twenty-five years of experience in the accredited continuing education enterprise, and his commitment to making a difference drives his passion for advancing patient care. He is an accomplished educator and has been an invited speaker for numerous engagements in the areas of compliance, regulatory issues, and best practices. Lemon is a certified Healthcare CPD Professional, past President of the National Association of Medical Education Companies, and recognized as a Fellow by the Alliance for Continuing Education in the Health Professions. Michael earned his MBA degree from the University of Denver, Daniels College of Business in Denver, Colorado.

 

Alyssa Rossi is a 40 Under 40 award recipient from the Alliance for Continuing Education in the Health Professions. As a CME leader at Iridium Continuing Education, she coordinates over fifty programs annually, reaching over 10,000 healthcare professionals and is leading her organization through ACCME accreditation. Alyssa has earned more than ten industry awards, pioneered conversational AI formats for clinical education and champions health equity across her programs. She serves as a past NAMEC Board Member, CPD 101 faculty member and Alliance mentorship volunteer.